Cerebral Palsy Awareness Month: Ozzy
Ezekiel Boaz Hunter (or, “Ozzy” for short) is a vibrant, outgoing five-year-old little boy.
On any given day, Ozzy is wearing his cowboy boots and leather “cowboy vest” while perched on the couch and watching his film-hero: John Wayne.
He absolutely adores John Wayne and can remember whole stretches of lines from the movies.
Ozzy's second, most admired hero is his daddy, who, Ozzy tells everyone with great pride, “is a firefighter.”
Ozzy's daddy is a former Tallahassee firefighter and a current volunteer firefighter in the little town where Ozzy lives with his family.
When his daddy's pager goes off, announcing a fire or car crash, Ozzy enthusiastically asks if he can “come too” and he eagerly waits to be 'older' so that he can accompany his daddy to the fires that he is quite sure his dad single-handedly extinguishes.
Ozzy loves John Wayne, but he is quite sure that he wants to be like his daddy when he grows up: he's going to be a firefighter and he already has some of his gear! A bright yellow fire coat, a vintage fire hat, and rubber “fireman's boots”.
Ozzy knows no stranger; it doesn't matter if you are old or young, scruffy or scrubbed, Ozzy will find a way to talk to you.
Ozzy also has cerebral palsy.
Shortly before he was born, Ozzy experienced a lack of oxygen and as a result, parts of his brain “shut off”.
At age five, Ozzy can't walk; he can't easily use a fork or spoon to feed himself; he has to concentrate in order to open up his clenched hands; he goes to therapy weekly; and the muscles in his smaller-than-average body are often tight and clenched due to his spasticity, which means he frequently experiences pain as his tightly pulled muscles become strained.
For Ozzy, being a five-year-old boy looks different than “average” children his age.
Being born with this condition means he's never been able to run and play in the yard and his mobility is limited to his wheelchair, unless someone is able to carry him up steps, slopes or other unfriendly terrain towards wheelchairs.
At five-years-old, Ozzy still needs others to assist him in eating, bathing, dressing and playing.
He knows he's a little different than other kids.
If you ask him why he's in a wheelchair, Ozzy will tell you: “I have cerebral palsy.”
But he doesn't yet realize the extent of that difference.
Ozzy is my little brother, my youngest sibling, and I am glad that while he understands his body behaves a little differently than other kids', he doesn't let it put a damper on his dreams and goals.
The future is bright for kids and adults like Ozzy, who's perfect, intelligent, bright minds and souls shine through even the difficulties that their bodies face.
Cerebral palsy is:
• Very different for each person. For some it can be moderate with slight coordination difficulties, while others experience greater disabilities through vision/hearing impairments, seizures, speech difficulties and lesser bodily control.
• Treatable, but not curable. There are varieties of treatments to help relieve muscle stiffness for people with cerebral palsy, as well as therapies and orthopedic procedures to improve other functions. But there is no cure for cerebral palsy to this date.
• Often misunderstood. People who have cerebral palsy are not victims of their disability and the medical condition is not a disease or a genetic condition. You cannot “catch” or “pass on” cerebral palsy and those who live with the condition are able to live a life that is equally vibrant, successful and adventuresome as any person without cerebral palsy.
Cerebral palsy is not:
• An invitation to public questions. Some people are very willing to speak about their cerebral palsy and answer questions; but for others, the questions posed by strangers are considered just as rude as if they are being randomly asked “What's wrong with you?” If you meet someone with cerebral palsy, always ask first if they are willing to talk to you about their condition. If they say no, respectfully honor their wishes.
• An intellectual disability. Many people with cerebral palsy have average or even above-average intelligence. When you interact with people who have cerebral palsy, it is incredibly rude to “talk down” to them. The minds and souls of people who live with cerebral palsy are just as bright and vivid as those who do not have the condition.
• Pain free. Most adults who live with cerebral palsy experience frequent pain, and many children do as well. The pain is caused by the condition which results in tight muscles and abnormal cramps.
• A lifestyle disadvantage. Like other kids, children with cerebral palsy can go to school, make friends, play and thrive. Adults are able to attend and graduate colleges, live independently in their own homes, go on dates, marry, have children, enter a profession and be community leaders.
March is National Cerebral Palsy Awareness Month, so throughout the rest of the month, remember that people with this condition need to be given the same opportunities to thrive and live in our communities. Take this month to learn more about this condition and those who experience it and find ways to help support the families and individuals who live with cerebral palsy.
March 25 is the National Cerebral Palsy Awareness Day – wear green to show your support and raise awareness!